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Wednesday, October 10, 2012

The Beginning

My new life... 
Welcome! this is the story of "my new life" after being diagnosed with Interstitial Cystitis. I want to share my story with you to educate and encourage. I would love for you to share your thoughts or comments as well.

Sunday, February 19, 2012 I was at lunch with my family and I had to keep going to the bathroom, my lower back was hurting and I felt miserable. Even though I felt very bad, I found comfort in being surrounded by my family. A feeling I would grow to understand more and more. I called my gynecologist the next day and he called in some antibiotics for me. 

After a week, I went in to see the same doctor and he prescribed different antibiotics. For three weeks I had extreme nausea, frequency, urgency, lower back pain and frequent night time voiding.  After the third round of antibiotics, I called the nurse and said  "I don’t feel better, I feel worse!" I went in to see the doctor and he said my urine culture was negative and last year when I thought I had a bladder infection, my urine culture was negative. He said he suspected that I had Interstitial Cystitis. I had never heard of this. Immediately, I went home and started to research this terrifying disease.
My gynecologist sent me to an Interstitial Cystitis (IC) specialist in a town about an hour away. My husband drove me there and I felt all right during the ride. By the time I saw the doctor, I was in unbearable pain in my lower back and pelvic area. His nurse first asked me a bunch of questions and then said “Did you research IC on the internet?" I said “Of course." She said “Do you think you have it?" I said” I hope not!" Then she gave me the IC Self Screener questions. The doctor said any score over 10 is suspicious of IC, I scored a 27. He also gave me a bladder instillation and I had some relief of my symptoms.

He diagnosed me with IC based on my pain level, the answers to the IC Self Screener questions and the fact that I had some relief from the instillation. He gave me some handouts, told me what not to eat, what drugs to take and said “I will see you in 2 months” I left his office in tears, I felt scared, alone and confused Really??!!  You just told me a have a disease that is going to change my life forever and you will see me in 2 months???  What about suggesting some therapy, support groups, some exercise or meditation that might help? What about seeing me sooner, what about saying “I’m sorry, but we will do everything we can to help you…something….anything!  I immediately started looking for another doctor!

I then started having additional symptoms.  I decided to go to an urologist in my hometown. And of course this might be an opportunity to get a different diagnosis, since I was in denial.  However, he agreed with the diagnosis and his solution was to keep taking more Lortabs, he even prescribed a stronger dosage. He said “IC patients take pain pills." " Do they become addicted?" Yes, but, oh well” he continued.  I was hoping he would disagree with the diagnosis or at least offer me some different treatment options. He did neither. Again, I left his office in tears. Still feeling scared, alone and confused.
I continued doing my own research and found the ICA’s web page. I also found the ICA’s facebook page. At last something that truly gave me the support I needed! Praise God for the ICA! I emailed the ICA and asked them for their referral list of doctors. I discovered an Urogynecologist in my home town. I made an appointment with him.

This would be my third opinion and hopefully he could figure out some different diagnosis that would be easily treatable and I could have my life back.  So I went to this new doctor longing for a new diagnosis or at least some different solutions. He agreed with the diagnosis (not what I was hoping for). He, however; offered me several different treatment options and here is the biggy…He said “What you are going through is very difficult and you have my sympathy.”  At long last I found a doctor that would be my new primary IC doctor for " my new life.”

My life has changed completely since the diagnosis. I have chronic pelvic and back pain.  The more I do, such as bending, sitting,standing or walking too much, the more it hurts. I have the energy level of someone in their eighties... I am only 46. I can no longer do many of the things I enjoyed before IC. I had to hire someone to clean my house. My seventy-nine year old mother comes once a week to help ME around the house. I rarely go shopping or to church because I don't have the energy or I don't feel well.

I have also been diagnosed with Irritable Bowel Syndrome (IBS) vulvodynia and fibromyalgia within the last few months. So far, this has been the hardest journey of my life. But I also see it as a new beginning. A chance to look at life differently. A chance to make a difference.  I can still be a good wife and mother. I can still smile at strangers that I pass on the street. I can still try to encourage my IC family on facebook. I can still be a friend to my friends when needed. I can still worship God. I am still me...only different. This is " my new life."

I hope this helps you understand a little bit better about what I am going through, but I also hope this encourages you. Maybe you need to slow down, reflect and take a step back from your life. What are you doing in your life to make a difference? I am limited physically now, but I can still write and hopefully comfort others. 

My hope for this blog is that I will encourage you and you will comment and encourage me. I plan to post regularly, so please read as much possible and let me know what you think.
God bless you all!
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Deuteronomy 31:6 Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.”

I would like to dedicate this blog to my wonderful husband of 26 years, Alan. He is always by my side and always there when I need him.